I’m sick of lupus (pun totally intended). I thought I’d be The One who had a flare and got better and would never get sick again. No such luck. It is too easy to get caught up in what I can’t do, shouldn’t do, may never do but still want to do. I have lupus, but it doesn't get to have all of me. So this is a place to share what works and what keeps us going. And yes to whine a little because sometimes you just have to. But laughter and smiles and warrior spirit too. Take that, stupid lupus.

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The fatigue of putting on a brave face

This is kind of a long post but the basic point is, don’t you find it exhausting to pretend you’re feeling ok to people who have shown that they just can’t acknowledge your illness? I do.

Back in August it was supposed to be a 5 day trip to see my family and check in with my rheumatologist at HSS (Hospital For Special Surgery in NYC). I brought 2 pair of yoga pants, 3 t-shirts, a pair of sneakers and my 1 year old 3 legged dog. No lie. Eleven weeks later I was still there.

When I mentioned to my doctor what I thought was a minor symptom, he sent me straight off to a neurologist, who ran a million tests hoping to rule out “worse diseases than lupus.” Very comforting. Physical therapy twice a week, but to my surprise it really helped. Then off to see a neurological opthamologist — I didn’t even new there was such a thing! — and he found the tiniest defect in my eye that was causing scary problems like double vision, dizziness, and lots of falls. The good news is that I am beyond lucky to have access to this level of health care, and that there was a solution. A very complicated and expensive eyeglass prescription, and things are already better. But all that time, I admit I was scared that something else was really really wrong.

Meanwhile, for that unexpected 11 weeks, I was staying with my parents in the house where I grew up. Make no mistake, they love me. But reverting back to old family dynamics when you’re a grown-up with a chronic illness that impacts your daily life… not so fun. Here are some examples:

My mom made a pitcher of lemon cucumber mint water, but she put it in a heavy glass pitcher on a high shelf in the fridge and I’m short, so reaching up for this thing hurt my neck and shoulder. The arthritis in my hands and fingers has advanced drastically, so trying to grip the handle of this heavy jug was an accident waiting to happen. A few days later she asked why I wasn’t drinking the water, and I said I really like it (always lead with the positive!) but I can’t get the pitcher out of the fridge. She said with irritation, “So you can pick up your dog but you can’t lift a pitcher?” I thought to myself, sarcastically, “oh that is TOTALLY worth being mad about.”

My mom has also decided that the kitchen is essentially a monument to meals gone by, not a room to be used for actually… you know… cooking and eating. If you so much as drink a glass of juice and set it down, she pushes you out of the way and jumps up to wipe down the countertop. If you leave a morsel of food in the drain while washing off a dish, all bets are off. Appliances I could use to make protein shakes or avoid the microwave are shoved so far out of reach they will never see daylight again. I was allotted a single drawer in the kitchen for “my stuff, my food I like to eat.”

So two things happened. (1) I started to feel sicker, because I was not eating the foods I normally eat. I’m not gluten-free but I ate more bread in that time than I have in 2 years. I didn’t cook grains with vegetables and bone broth because she likes to sit at the kitchen counter playing Sudoku which makes it impossible to get to the stove. And I had no access to a car to shop for fresh food every few days like I’m used to doing. (2) I was totally stressed every time I had to step foot into the kitchen. I made some trail mix, a bowl of apples and largely lived off that for a lot of the time.

So you’re thinking, wow her mom is a bitch! No, she’s not. She’s just her, living her life, probably getting way more OCD as she ages (which I’ve heard happens) and having no understanding of why these little things are so important to me and my health. Until one night when I brought it up and things got out of hand with my dad trying to referee. The argument ended but I was DONE IN. I spent most of the next week in bed, getting up only to walk my dog. When I felt a little better I went downstairs and told my parents, “I think you have assumed that I was having some kind of adolescent tantrum by hiding in my childhood bedroom upstairs for a week, but in fact I have been unable to get out of bed. You assume the worst in me because I work so hard to seem ok to keep you from worrying, but look at how it backfired on me. I risked a serious flare, which could lead to me having a stroke, because you had to yell about where a dish goes? After 10 years you still refuse to acknowledge that what I have is serious and it’s forever and it bleeds into every aspect of my life.”

Crickets.

I still had 6 weeks to go. In all that time, no one offered to walk my 1 year old small dog so I could rest. It became a thing to leave my young niece with me all day and night on Saturday AND Sunday while they did their thing. I love my niece and she is a riot, and she was so happy to be spending time with me that I couldn’t say no. But I was freaking WIPED OUT. And no one ever said a word about it. So I spent the rest of my visit doing my best to seem ok. When I was exhausted, I said I was going upstairs to meditate. When my brain was so foggy I couldn’t have a conversation over dinner, I said I had phone calls to make. And when I felt ok, I pulled it together and presented myself as a sort of normal person.

I left their house 3 days ago. I can feel the war going on in my body as I fight the exhaustion trying to take over me. I haven’t eaten a healthy thing since I left because I’m too tired to get up and cook something normal. I hope to bring out my beloved yogurt maker tonight and make a batch because that stuff is awesome. But maybe I’ll just get into bed early.

So this isn’t my funniest post, but it’s real. Even my indefatigable Jack Russell terrier. @Able_the_3_legged_dog, is wiped out. There’s a family occasion in a month I can’t miss. This time Able and I will take my car so I’m not trapped there.